Have we talked about Charlie Gard?

[EmseB]

A heart transplant meant that she could grow up and be a normal kid, no?  That's the difference.  There was a reason to put her through it all.  Charlie Gard has no chance of ever growing up or being a normal kid no matter what they do.  There is no possible cure.

 

No, it was not guaranteed that the heart transplant would work.  There was a high chance she would never grow up or be a normal kid.  There was a high chance she would never come off the bypass machine in the OR. She had multiple clots in her various places in her body, she had been through at least one open heart surgery before.  The heart transplant was not a guarantee in any sense that she would grow up and be a "normal kid."  And she will still not be a normal kid as her parents have to give her many medications, take her to traumatizing blood draws, and transplant hearts usually only last about a decade or so.  So, no she won't ever be a "normal kid."

 

But, in any case, I was speaking in generalities in reply to FM's comment about not doing things to others when there is a slim chance of survival, not speaking of Charlie Gard specifically.

 

My point was that people make medical decisions for their kids when the kids' chances are slim to none all the time.  And sometimes, all the heart transplants, feeding tubes, blood transfusions, ventilation, intervention, chemo treatment, surgeries...sometimes they still end poorly. You only know after the fact. There are times when parents are given zero odds and then some treatment works.  Those times are rare, to be sure, but it's not like a doctor or team of doctors has never been wrong about someone walking again, or talking again, or coming out of a coma.  I took FM to say that those cases don't matter when it comes to kids because the parents shouldn't hope for any scenario like that or make decisions based on that kind of hope. I think in some cases the parents are right to continue fighting and in some cases they are not.

 

 

*********

As an aside, if I had a special needs kid I'd be pretty heartbroken to think that the bolded is the criteria for when intesive medical intervention is appropriate. I have a special needs nephew who will never walk or talk because of a birth injury and seeing it in those terms kind of makes my blood run cold.  As long as you can grow up and be "normal" then you can have treatment. Other than normal, what?

[EmseB]

A transplant is NOT remotely the equivalent of what is happening to this child. Not even in the same realm.

 

His particular version of micochondrial deletion syndrome means he cannot even sustain his brain, his kidneys, his liver. He cannot fuel organs even if they were replaced. Even the US researcher had to admit when he finally became aware of Charlie's true condition and the actual deletion disorder he has that he can't be treated.

 

Prematurity is also not equivalent. Charlie's cells cannot convert energy. That is entirely different from being born early but with functioning DNA. The two are not comparable.

 

I was speaking in generalities as you were speaking in generalities. I was not speaking about Charlie's case. I was speaking to your comments about medical treatment and life/death issues in general. I quoted you directly.  I apologize if I misinterpreted what you were saying.

 

There are diseases that were incurable in the past and are now curable because people suffered having medical treatment that no one thought would work, and often didn't work but provided data. It's hardly unheard of, or even rare these days, even for kids.

[Spy Car]

A little story. My dad (who I loved beyond words) was a Marine fighter pilot in WWII. He was injured in combat when his plane went down at sea during the biggest typhoon of the war. He broke his back in the crash landing and due to the immense bravery of mean on a Naval Destroyer (whose ship was enduring rolls that were far beyond the ship's rated capacity) he was rescued just before nightfall. He was later told that had night fallen the search would have ended.

 

The injuries were quite bad and he spent a year in a body cast. He was in a stateside military hospital on VJ Day.

 

He recovered remarkably well, and was not a complainer. The government decided he had a 10% disability. He didn't quibble.

 

As a result of his combat service, he had VA benefits.  Most of his life it didn't matter much—he was a health and active man—and the need fo medical care was rare.

 

But in his later years, as it is with most people, those needs grew.

 

While we don't have "socialized medicine" in the US, exactly, the VA is about as close as it gets. It is definitely government heathcare—Federal government healthcare.

 

Many will bash the VA, and I'm sure with some cause, but in my father's case it was a blessing. It helped immeasurably that I was there for him as an advocate and we had the great fortune to get into a Geriatric unit with a supervising physician who loved my dad, and the most extraordinary nurse manager (a woman who worked the system on my father's behalf) looking out for him. He was blessed.

 

But in this government-led healthcare system, there was incredible pressure brought to bear from administrators for him to sign a DNR (do not resuscitate). The pressure to sign such forms when on forever. He wasn't interested, which wasn't the answer they wanted to hear. It got to be heavy pressure, so I got a medical power of attorney and informed the hospital from now on to deal with me.

 

Still, in a particularly bad moment for my dad, I came back from getting lunch to find him being bullied by a very obnoxious doctor (the only really bad one I ever encountered at the VA) and I blew my stack. He was removed from my dad's case.

 

The DNR requests never ended. One a really sweet young woman came in and started in with him (despite the orders not to), but he was in a good mood, so I let it go.

 

She said, Mr [lastname] is anything should happen to you, say your heart was to stop would you want us to take extreme measures? As she asked the question she slowly moved her head from side to side, to cue him to say no/

 

He just looked into her eyes without answering. "We might need to break your ribs, you would want that, would you?"

 

Then in a moment that I wasn't sure was genuine puzzlement on his part or not, her stared quizzically at her with his bright blue eyes, waited for what must have seemed to her like an eternity and said, "As opposed to what?...................as opposed to dying?

 

The young woman blushed crimson. My father said calmly, "I would prefer having broken ribs to death."

 

He lived for a long time after that. Towards the end the pressure increased. I told them, "look, when I feel my father's time is at hand I will let you know. And at that point, I will sign a DNR. Until that time this discussion is over."

 

About 10 days before he passed I knew the end was near. It was time for him to enter hospice and "no extreme measures" was part of the deal. It was time, as much as I didn't like it he was going to pass. So I camped out, learned to use the suction machine, controlled his meds, and was there holding one hand while my dear brother held the other when he passed.

 

Why the long story? Seems to me that even a system that largely works for a person—one viewed as blessing by family and patient—can have pressures to terminate. This isn't a conspiracy theory, and we had our way in the end. But if some poor guy had no family, no support, no advocates and they suffered the sorts of confusion that's common in old age, care isn't always what it should be. And I think some people are allowed to slip away—in part—for convenience. clearing beds. Hate to say it, but I spent a lot of time in VA hospitals.

 

Bill

 

 

 

 

 

 

 

 

 

[ChocolateReignRemix]

I think the whole death squad thing must be peculiar to the American psyche then, because nowhere I've lived with socialised medicine has this ever been a real concern.

 

I am also boggled that you people think a hospital ethics committee is part of 'the government'.

 

They are taking issue with the court being part of the government. 

[Lucy the Valiant]

Hard to "like" your post, Bill, but thank you for sharing that. 

 

 

[Crimson Wife]

They are taking issue with the court being part of the government. 

 

This particular hospital *IS* part of the government. It is an affiliate of a public university, University College London. The committee members at the hospital may not be elected, but that doesn't negate the fact that they work for a government organization.

[Pam in CT]

I think the whole death squad thing must be peculiar to the American psyche then, because nowhere I've lived with socialised medicine has this ever been a real concern.

 

I am also boggled that you people think a hospital ethics committee is part of 'the government'.

 

 

The death squad rhetoric was a response to a much earlier (well before ACA) effort to restructure the health sector.

 

 

In our patchwork system, there obviously *are* many cases where private insurance companies make decisions to decline to cover procedures, treatments and medications; sometimes with life-shortening consequences.  I've never heard the "death squad" terminology being applied to insurance companies and their coverage decisions, though.

[Crimson Wife]

If I get a job at the University of California-San Francisco Medical Center, I would be working for a government organization. If I get a job at Stanford Children's Hospital, I wouldn't. The former is part of a public university while the latter is part of a private university. I don't see how this is so difficult to understand. :confused:

[Spy Car]

Hard to "like" your post, Bill, but thank you for sharing that. 

 

It was originally intended to be short. But you know me :D

 

Even I lost the point of where I was going by the end.

 

Life, you know? It's complicated. And it beats the alternative.

 

Kinda like broken ribs are better than dying. Right? 

 

Bill

[TCB]

If I get a job at the University of California-San Francisco Medical Center, I would be working for a government organization. If I get a job at Stanford Children's Hospital, I wouldn't. The former is part of a public university while the latter is part of a private university. I don't see how this is so difficult to understand. :confused:

 

Well I guess the NHS is a government run body, funded by taxpayers, but that doesn't mean that it does not have an independent ethics committee. It's a different country, and a different system, so you can't always draw parallels with your own countries organizations.

[Spy Car]

If I get a job at the University of California-San Francisco Medical Center, I would be working for a government organization. If I get a job at Stanford Children's Hospital, I wouldn't. The former is part of a public university while the latter is part of a private university. I don't see how this is so difficult to understand. :confused:

 

Go Bears!

 

Give 'em the axe!

 

Bill (Cal grad who has to root for the Cardinal because his nephew is the point-guard for the wrong basketball team)

[Crimson Wife]

Go Bears!

 

Give 'em the axe!

 

Bill (Cal grad who has to root for the Cardinal because his nephew is the point-guard for the wrong basketball team)

 

My mom is a Cal grad and my oldest daughter might be one some day (though she's hoping to be a Bruin and could well wind up an Aggie). Good thing I care so little about college sports :tongue_smilie:

[Crimson Wife]

Sure. But the court upheld the hospital's pov. It didn't just come along out of nowhere as part of a government effort to kill poor defenceless babies. This was a medical decision, not a political one.

 

Only if you don't consider parental rights a political issue. I agree with you that the Charlie Gard is not about single payer healthcare. But it is fundamentally about who should have the authority to make decisions on behalf of the child- the parents vs. the government (government hospital backed up by the judicial branch).

 

[Spy Car]

The death squad rhetoric was a response to a much earlier (well before ACA) effort to restructure the health sector.

 

 

In our patchwork system, there obviously *are* many cases where private insurance companies make decisions to decline to cover procedures, treatments and medications; sometimes with life-shortening consequences.  I've never heard the "death squad" terminology being applied to insurance companies and their coverage decisions, though.

 

The thing is, from the way I see it there are two basic sorts of systems.

 

One, where the bulk of the costs are on you. In such a system (especially with doctors/others who might own x-rays machines, fancier scanners, labs, etc) a patient can find themselves in a position of saying, "do I REALLY need that test, doc?"

 

Likewise, when one looks at an exit and starts to imagine what hospital bills might do the estate one hoped to leave loved ones, it can lead people to downsize their demands on the system.

 

The other, where one is covered for basically everything. Then, with private insurance of group plans, one may need to fight for tests that "the other guy" is going to pay for. or treatments, surgeries, etc.

 

In universal care, these tensions won't really go away.

 

If the government pays for "everything," it will be attacked for cost over-runs, fraud opportunities, etc.

 

When it tries to limit costs, it will be accused of being a death panel.

 

So we will never run out of thing to complain about in our old age.

 

Bill (optimist)

[bettyandbob]

In fact, I'd say "home" for this child is actually the hospital.

 

Even if the parents' reasons were to take Charlie out of the hospital to go "home" and not seek out some miracle somebody promised, the "home" the parents are talking about is for the parents' comfort and privacy not his. I do not know about this particular hospital, but I do know a good many hospitals have worked to provide comfortable, private spaces for families like this one to spend the last moments of their child's life. My neighbor's knew before the birth their grandchild would not live long. The hospital planned the birth and hours after the birth carefully and provided the space that family needed to be with their baby while got a glimpse of the world and said goodbye in the span of several hours. My neighbor noted how it was so special and intimate for her dd while she rocked her gds. Some hospitals do end of life events well. 

[TechWife]

 

There's no reason an infant on life support can't be safely and painlessly transferred to a home environment before removing that support. The hospital staff may think they are doing the best thing for Charlie by removing life support, but refusing the transfer is just one last way to screw over the parents and exert control. I lose all respect for the hospital on that one.

 

Have you watched someone who is vent dependent being transferred? I have - it was my son. It's entirely possible he could die in transport. Transporting someone on a ventilator is no easy task. 

[Paige]

The hospitals I'm familiar with had special rooms for special cases. These were more home-like rooms that allowed greater privacy and were sometimes used for saying goodbye. If life support or treatment were to be ended, the patient could be moved to this room and the family given privacy in a setting as close to home as possible. Do hospitals in England have rooms like that? 

 

I feel nothing but sympathy for Charlie Gard's parents while respecting the medical board and court's decision. I don't know the full extent of his diagnosis, but it seems like there is no hope for recovery at this point. I think it is similar to the Jahi McMath case, except that nobody thinks she is personally suffering. Perhaps letting him go now is the best option, or perhaps letting the parents have more time and more hope would do no harm. I don't know. It's a terrible situation and both sides get my sympathy and I have no idea what is right or wrong; I'd hate to be a decision maker in cases like these as a parent or medical professional. 

Edited July 7, 2017 by Paige

[Carol in Cal.]

I think the whole death squad thing must be peculiar to the American psyche then, because nowhere I've lived with socialised medicine has this ever been a real concern.

 

I am also boggled that you people think a hospital ethics committee is part of 'the government'.

 

Holland comes to mind.

[Carol in Cal.]

Because the act of moving him would likely be both painful and terrifying to this kid, who has no way to understand what is going on, or to make sense of the new sensations.  And because dying separated from everything that is familiar, is particularly hard.

 

As an adult, given the choice, I'd want to die at home.  My father had that luxury, and I do think that being surrounded by the familiar was a great comfort to him.  

 

But for this kid, what is familiar is the hospital bed, the touch of the people there, the smells he associates with it.  The adult logic of wanting to be "home" doesn't make sense for this little guy.

 

My heart breaks for these parents.  I'm not saying that I know what's right, but I can see why people would think it better for him to stay.

 

I can, too, and I think that the parents could, too, if it were put to them this way by someone other than the specific hospital staff.  But it's all mixed up with the hospital wanting to pull the plug, and so naturally is suspect.  It's so hard.

[Spy Car]

I don't know how to explain that a public hospital, having its funding distributed from the taxpayer via the government, isn't a 'government hospital.' It's more indirect than that.

 

And it's not a parents rights issue. The UK law is about the rights of the child.

 

I think we can all agree it's a really sad story.

 

That's sorta why I told my long story above. In our case, it was a government hospital. One owned, funded, and run by the Federal government. With some really great upsides of the sort those with universal healthcare in other nations enjoy.

 

And some other parts that seemed ready to gently nudge the willing along into the afterlife.

 

Mixed bag. Hard to avoid when any system will need to contain costs.

 

Bill

[Spy Car]

I don't know anyone here who has been nudged along. That's all I can say. There are things that concern us about our healthcare system, but being pushed off the ledge isn't one of them.

 

Honestly, we probably err on the side of too much treatment than not enough.

 

Obviously, I don't doubt anyone's lived experience in their own systems. It's just not a general public concern here.

 

Perhaps Americans are more accustomed to ruthlessness (real and imagined)?

 

Bill 

[Anne in CA]

I think the whole death squad thing must be peculiar to the American psyche then, because nowhere I've lived with socialised medicine has this ever been a real concern.

 

I am also boggled that you people think a hospital ethics committee is part of 'the government'.

I had a weekly Bible study with a woman from the UK. Her mother suffered a LOT from people in charge of her care. Any hospital funded by taxes IS the government. I understand your reaction, but I disagree with it. 

 

I have a lot of mixed emotions about this case for many personal reasons that I already stated on the political group and this one. I went to grade school and middle school and half of high school with someone that LOTS of people know on this board who had weird medical stuff and had a lot of kids who need over the top medical care. This person never should have had one kid, given his own bad health. It was irresponsible. But this person belongs to a "religion" that thinks you need lots of kids.  So he had a bunch. Now they all need lots of complicated medical care. I don't begrudge him the money, although it's in the $$$$$$$$$. But, dude, you were never healthy to begin with, why did you have so many kids who might have been the sole responsibility of your spouse????? It was truly reckless. I may be outed, lol. But, this issue is complicated.

 

Once the child is here, that child deserves everything a parent can do. A parent that doesn't fight for their kid... that isn't me. I have not only fought for my kids, but I have stood down for my kids. Standing down is the harder parenting skill, but you don't have it until you have been through everything. These poor people haven't been parents long enough to know standing down is SKILL!

[dancingmama]

My son was terminal at birth. Luckily the hospital allowed us to take him home on a DNR (do not resuscitate). Once we left we were able to find someone to work with us. He had his final surgery last year and is going into high school. Although he may have some learning disabilities, he's not dead and he can be a productive member of society. He is no longer terminal thanks to an experimental procedure or two. The surgeons that worked with us were able to refine the experimental procedure and it is now used in other cases like his, at a younger it, with high success. Doctors are not gods and they call it the PRACTICE of medicine for a reason. Parents are the ones who need to live with the decision for the rest of their lives. They should have the final say, barring any outlying mental health or criminal issues, after all the information as they know it are presented. And second opinions should be mandatory, including a transfer to another hospital, if the parents and doctors disagree and the parents request one.

[Anne in CA]

I'm not trying to be a jerk... but... if a healthcare entity is funded by tax dollars... how is is not part of the government?

[Spy Car]

Idk.

 

I absolutely don't doubt what happened with your dad.

 

I wonder whether some of it is perception ? I might see a discouragement of asking for heroic measures as a offering a person a means to avoid prolonged suffering?

 

I just don't know. I'd hate, though, for this idea that socialised medicine means the government cutting off your life support Willy nilly, because it doesn't mean that.

 

I really feel for the medical staff who made this choice. I absolutely believe they were making a call based on the right of that poor baby not to suffer needlessly. I do not imagine they made it lightly, or under a government directive.

 

I'm not trying to present this system as evil. We had some angels on earth helping my dad.

 

And I'm sure those seeking DNRs were not hoping to do my father in (exactly). They just had pressures, I'm assuming, from administrators to get these things signed. Part of the motivation was likely to avoid needless or painful resuscitation measures, especially when patients were otherwise ready to go.

 

But am I willing to remove cost savings from the equation entirely? Err, no.

 

If the system was really there to listen to the patient's wishes, they'd have quit asking after the first 15 or so times my dad said he preferred to live even if there were broken ribs or ventilators. Not a close call in his mind. He was strongly interested in remaining alive.

 

When doctors would say "Mr [last name] YOU ARE  91", he'd often respond, "you know I was discussing this my older brother the other day, he's 94, and..."

 

That usually shut them up. If not he'd launch into the things he had plans to accomplish.

 

Uncle will be 100 soon, BTW.

 

Every system has pressures. Most get down to money. I don't expect to cure that problem.

 

Bill

[melmichigan]

It will just get more complicated. "New York Presbyterian Hospital and Columbia University Irving Medical Center said they would admit and evaluate Charlie “provided that arrangements are made to safely transfer him to our facility, legal hurdles are cleared, and we receive emergency approval from the FDA for an experimental treatment as appropriate,†the hospital said Thursday in an email statement to The Washington Post."  This experimental treatment hasn't even been tested on mice, but they want to give it to a child?  There has to be a line somewhere, just because we can doesn't always mean we should.  The hospital turned down the Vatican offer.  I can't see them going for this new one any better.

Edited July 7, 2017 by melmichigan

[Anne in CA]

Well, if you said 'the govt' here, people would understand you to mean the governing party. They don't own or fund the hospital. The state owns it (the people, in other words) and the government of the day distributes funding (taxes from the people).

 

The government of the day has influence over funding and macro settings, but it doesn't have much, if at all, to do with the micro level care you receive as an individual.

 

That is more to do with the hospital management and your own doctors. Who may be employed by the state, but are not part of 'the government'.

 

It isn't as if, in the UK, Theresa May can pop in and order that all babies on life support be given two weeks and that's it!

 

At the micro level, it's an arms length relationship.

I thank you for the explanation... I still don't see how its an arm's length relationship, but in another world I suppose things are very different.

[Twolittleboys]

Not so much related to Charlie Gard as I don't think there is much to say about it but:

 

I guess I don't quite see why the hospital being part of the government (I am with Sadie on this really but let's just go with it for now) would make it more likely that they put cost over patients' lives (if I understand it correctly) than if the hospital is a private business? Wouldn't a private hospital which presumably is in the business of turning a profit have even more incentives than a government entity (which obviously wants to save money but doesn't really profit of it)?

 

Obviously, no health care system is perfect and there will always be conflicts of interest. But honestly, when I hear the prices people in the US have to pay for regular procedures (appendix, short check in emergency room etc.) it is just ridiculous. The same costs a fraction in Germany and I presume in the UK.

[SarahW]

Holland comes to mind.

 

 

Sigh.

 

NOPE.

 

The Netherlands doesn't even have government-run healthcare anymore. It hasn't for like, the past 10 years.

 

There's still euthanasia, sure. But that was ALWAYS a private decision. And still is.

 

 

But government here does NOT kill off its old and sick people. Seriously. They just DON'T.

[Melissa in Australia]

Don't forget that the majority of countries that have universal health cover HAVE A HIGHER LIFE EXPECTANCY than USA

 

 

 

 

So obviously they are not bumping people off

[Pawz4me]

I'm not trying to be a jerk... but... if a healthcare entity is funded by tax dollars... how is is not part of the government?

 

In my pre-SAHM life I worked for a large law firm. The partner I reported to specialized in health care law. We represented many, many hospitals, some public and some private. Some of them huge university teaching hospitals and some of them tiny rural facilities. I can tell you that the operation of each was the same. I saw zero difference in how decisions were made regardless of whether the hospital was public or private. And yes, during that time we had a few (but just a very few, and nothing on this level) heart breaking patient issues that had to go before ethics committees with end-of-life decisions. From what I could tell they were all the same. If anything the public hospitals seemed to be more efficient and less snarled with red tape than the private ones.

 

But that was over 21 years ago. I don't know if or how that may have changed. But back then being public had zero impact on how decisions were made, how executives, boards of directors or anyone else was employed or terminated, etc. There was no difference at all in their operations that I could tell. The public hospitals weren't doing any extra reporting to local/state/federal government that the privates didn't do.  

[bettyandbob]

If the strict definition is benefitting from taxes, I would consider any non-profit government. Therefore there's no hospital I can think of in the US that isn't government.

 

I personally don't believe that. However, to suggest that the US government doesn't have a hand in hospitals is not accurate either.

[Bluegoat]

I think the point of transferring home is so that the parents can have the peace of those last moments in a place where they have privacy and emotional safety. 

 

Can you imagine having to say goodbye to your child in the hospital that fought in court to take him off child-support? Can you imagine having the drs and nurses that *hate* you smugly standing over you after pulling life support? Can you imagine never having that private moment to say goodbye?

 

There's no reason an infant on life support can't be safely and painlessly transferred to a home environment before removing that support. The hospital staff may think they are doing the best thing for Charlie by removing life support, but refusing the transfer is just one last way to screw over the parents and exert control. I lose all respect for the hospital on that one.

 

Hospitals are generally pretty practiced at giving privacy to families in these situations. 

[Bluegoat]

If I get a job at the University of California-San Francisco Medical Center, I would be working for a government organization. If I get a job at Stanford Children's Hospital, I wouldn't. The former is part of a public university while the latter is part of a private university. I don't see how this is so difficult to understand. :confused:

 

Um, no.

 

Bodies that are funded through taxes are not necessarily part of "the government". We have very few private universities here, nor I believe does the UK.  But those institutions are specificaly set up to be governed independently. The people who work at them are not civil servants.

[Butter]

Bill, I have no doubt your father experienced that.  But I also want you to know I have observed doctors and nurses in private hospitals pushing for people on private insurance to sign DNR orders as well.  It is certainly not unique to the VA.  My uncle had Hep C from a blood transfusion and, eventually, he collapsed and was in bad shape and they pretty much insisted my mother (he was single, no children so she was his medical power of attorney) sign a DNR order and pushed VERY hard (two different hospitals).  He ended up recovering and had another good two years, but he was often pushed - hard - to sign a DNR over that two years.

[Bluegoat]

Idk.

 

I absolutely don't doubt what happened with your dad.

 

I wonder whether some of it is perception ? I might see a discouragement of asking for heroic measures as a offering a person a means to avoid prolonged suffering?

 

I just don't know. I'd hate, though, for this idea that socialised medicine means the government cutting off your life support Willy nilly, because it doesn't mean that.

 

I really feel for the medical staff who made this choice. I absolutely believe they were making a call based on the right of that poor baby not to suffer needlessly. I do not imagine they made it lightly, or under a government directive.

 

If I had to take a guess, the kind of pressure Bill described might well have been related to a push in the organization to provide better end of life care.  People not having DNRs, or really understanding them, has been a significant problem.

 

Sometimes when organizations decide to spend energy on correcting problems like that, they end up doing so with the subtlty of a jack-hammer. 

 

From what I can see, the American stem where the patient is also a customer really tends to suffer from a mentality that the customer gets what he pays for - even if those are tests that aren't really necessary, for example.  It's pretty well known that there is a huge amount of waste in terms of testing that would be considered medically ridiculouos iin other systems.  Or - similarly is the fact that the US is one of the few places that consider yearly physicals a good idea, medically speaking.  It is seen as serving the customer like a business, and it can make people money, to boot.

 

I suspect in systems like Australia or here in Canada, that is all just so foreign, and the outcomes seem crazy.  And we just don't have so much of a perceived need to combat that kind of crazy, either.

[Pam in CT]

The thing is, from the way I see it there are two basic sorts of systems.

 

One, where the bulk of the costs are on you. In such a system (especially with doctors/others who might own x-rays machines, fancier scanners, labs, etc) a patient can find themselves in a position of saying, "do I REALLY need that test, doc?"

 

Likewise, when one looks at an exit and starts to imagine what hospital bills might do the estate one hoped to leave loved ones, it can lead people to downsize their demands on the system.

 

The other, where one is covered for basically everything. Then, with private insurance of group plans, one may need to fight for tests that "the other guy" is going to pay for. or treatments, surgeries, etc.

 

In universal care, these tensions won't really go away.

 

If the government pays for "everything," it will be attacked for cost over-runs, fraud opportunities, etc.

 

When it tries to limit costs, it will be accused of being a death panel.

 

So we will never run out of thing to complain about in our old age.

 

Bill (optimist)

 

 

I agree with your larger point that tensions associated with costs never go away, no matter how the sector is structured.  

 

 

I don't think there is any system in the US or its peer nations in the developed world that quite fits either of the two theoretical spectrum ends you describe as an overall system, though.  

 

In the US today, there are people who are completely uninsured, and others who are seeking uncovered services such as LASIK or cosmetic surgery, who may scrutinize the costs of certain procedures before they agree to them.  Because of the way the system as a whole is structured, though, it is quite difficult to do so in any kind of emergency moment -- when a patient here agrees here to a test, there is usually no way of knowing in the moment if that test will be $100 or $500 or $2,000.  It's not like there are price lists posted; it's not like the recommending physician in a hospital setting even knows; in fact, given how much adjustment medical providers make ex post to medical charges, it's not like there is even a true answer to the question.  And the US system has more cash & carry patients -- on both the uninsured end, and the elective surgery & experimental procedure end -- than any of our peers with universal coverage.  Some may well be eyeing the drain on the estate with anxiety as a general concern, but as a practical matter it is not really possible to make choices about particular procedures or tests or treatments because the transparency around what things cost just isn't there.

 

On the other end of your theoretical spectrum, it's not as if any system really provides unlimited treatment chosen by the patient in perpetuity either.  Private insurers here *do* in fact refuse to cover certain treatments and medications and devices... just as publicly funded Medicare does here... just as single provider & single payer & other forms of publicly supported universal care in our peer nations also have criteria for what is provided.  

 

All health systems ration care.  In ours, the rationing is largely outsourced to private for-profit insurance companies.  But we still have it.

 

 

 

It does not appear that costs or rationing are driving decision making around poor Charlie Gard's case -- rather, a different tension, between the rights of the child vs the rights of the parents.  In the US we lean pretty hard culturally towards parental rights. 

[Bluegoat]

I thank you for the explanation... I still don't see how its an arm's length relationship, but in another world I suppose things are very different.

 

Well, do you consider a not for profit agency, or a sports team, that is given access to tax dollars, part of govenment?

 

What about a church - in many places in Europe, a portion of some peoples taxes are distributed to a church body.

 

What about historic buildings that get grants for their up-keep, because they are nationally important in some way?

 

There are all kinds of ways that bodies can have a relationship to government and yet also be seperate bodies.

 

For example, our power company in my province is distinct from government, but related.  They exist with their own board, and are run as a business.  But because of their importance and because they have a monopoly, there are special rules about their governance - for example many decisions have to go by a board that rules about them - they are looking at the viability of the service but in light of the public good.  The board is people appointed by stakeholder groups, but the rule that makes it exist comes from legislation, and its paid for by taxes.

 

Health care here is funded by taxes.  The insurance body is run, more or less, by government, but with transparent processes to determine certain things for the public good.  These bodies are not composed of civil servants.  They negotiate with the professional organizations (doctors and nurses) around pay, and to determine how to set up pay structures.  Many doctors are private businesses paid by the public insurance.  Others, and most hopitals, are run by health regions in terms of things like infrastructure.  Care decisions are run by hospital boards and structures, which make independant decisions from government policy.

 

In fact, often these kinds of bodies are actually in opposition to what the political level would like to do about things - there are tensions all over.  They are specifically set up so that they make decisions independently of political decisions.  That's what an arms reach organization is.

 

Another example, there is an independent, transparent  body that determines what kinds of drugs and procedures the universal insurance will pay for.  In the past, there have been a number of occasions where that body has made a decision, and the public has disagreed, and it had to revisit the decision, and either reverse or modify it.

[bettyandbob]

 

All health systems ration care. In ours, the rationing is largely outsourced to private for-profit insurance companies. But we still have it.

 

 

YES.

 

Rationing occurs all the time in the US.

[Daria]

YES.

 

Rationing occurs all the time in the US.

 

This is the thing I find hard to understand about people's fear of rationing with universal health care.  Rationing happens all the time in our current system.  

[Carol in Cal.]

Perhaps Americans are more accustomed to ruthlessness (real and imagined)?

 

Bill 

See, this is why when other countries are cited as the reason why universal health care would work here, I always think, no, our culture is not one that would enable us to set up a trusted or even a trustworthy system.  It's not just ruthlessness; but that's part of it.  Profit motive/cost cutting trumping compassion is another.  And lastly, a general lack of ultimate responsibleness in government is the worst.

[Carol in Cal.]

I agree with your larger point that tensions associated with costs never go away, no matter how the sector is structured.  

 

...

 

On the other end of your theoretical spectrum, it's not as if any system really provides unlimited treatment chosen by the patient in perpetuity either.  Private insurers here *do* in fact refuse to cover certain treatments and medications and devices... just as publicly funded Medicare does here... just as single provider & single payer & other forms of publicly supported universal care in our peer nations also have criteria for what is provided.  

 

All health systems ration care.  In ours, the rationing is largely outsourced to private for-profit insurance companies.  But we still have it.

...

The thing is, private insurers in the US, whether they are for profit or nonprofit, are regulated by state insurance commissions.  So there is a bit of a 'check and balance' set up built into the system that would not be there in a fully government run institution.  I have seen this help consumers significantly.

[Pam in CT]

re regulation shaping insurance company rationing:

 

The thing is, private insurers in the US, whether they are for profit or nonprofit, are regulated by state insurance commissions.  So there is a bit of a 'check and balance' set up built into the system that would not be there in a fully government run institution.  I have seen this help consumers significantly.

 

Agreed.  Universal health care systems like Germany's (which has multiple insurers and multiple providers, mostly private) also rely on regulation to modulate both prices and what medical procedures / treatments must be insured and to serve as patient advocate/safeguard/check and balance.  

 

Again, though, that does loops back to "government" (whether it's state-level or federal).

 

 

 

TR Reid did a really good comparison a few years ago on how different countries have tackled the challenges of the health care sector, which touch on how different types of systems address many of the issues in this thread.  Highly recommended.

[Spy Car]

Bill, I have no doubt your father experienced that.  But I also want you to know I have observed doctors and nurses in private hospitals pushing for people on private insurance to sign DNR orders as well.  It is certainly not unique to the VA.  My uncle had Hep C from a blood transfusion and, eventually, he collapsed and was in bad shape and they pretty much insisted my mother (he was single, no children so she was his medical power of attorney) sign a DNR order and pushed VERY hard (two different hospitals).  He ended up recovering and had another good two years, but he was often pushed - hard - to sign a DNR over that two years.

 

Yes, I totally agree. And I truly believe my father enjoyed a longer and better life because he had for himself, what looks like "universal healthcare" in other places.

 

He had great care through the VA, and wonderful caring people looking out for him. 

 

All systems have cost containment pressures. If they ignore costs, systems would go bust. There will always be tensions over when to say when.

 

Making healthcare secure for fellow countrypersons is a high priority item for me. I'd rather kvetch about small deficiencies than see people abandoned by the system and lose regular access to medicine entirely.

 

Not a close call.

 

Bill

[goldberry]

The thing is, private insurers in the US, whether they are for profit or nonprofit, are regulated by state insurance commissions.  So there is a bit of a 'check and balance' set up built into the system that would not be there in a fully government run institution.  I have seen this help consumers significantly.

 

I haven't seen it help consumers very much at all when care is being denied.  The appeals process is ridiculous and lengthy, and sick people don't often have the ability or the resources to engage it.  There have been cases where the person was dead before it was resolved.  

 

And aren't those "regulations" what the current admin is trying to get rid of?  So that prices will go down? Once that is depleted then what do we have?

 

Why couldn't a government run institution have checks and balances?  Separate appeal agency, or separate monitoring agency.... You could say fox/henhouse, but yet we rely on separate government branches now for checks and balances. 

[goldberry]

 

 

If the government pays for "everything," it will be attacked for cost over-runs, fraud opportunities, etc.

 

When it tries to limit costs, it will be accused of being a death panel.

 

 

 

This is so true. 

 

Just on WTM we have stories like Bill's where someone was pressured to sign a DNR when not appropriate, and other stories where families WISH the doctor had offered that or discussed it that but didn't.  Someone in Bill's dad's position might have made the exact opposite choice, same situation, based on a million other life factors.  The more I read the more I understand how doctors are often in a no-win situation.  What they are praised for by one family they will be criticized for by another family.  

 

Healthcare plans in general will be the same.  

[Carol in Cal.]

Aaaand...the momentum toward legalizing assisted suicide combined with cost-cutting pressure is alarming...

 

https://www.wsj.com/articles/i-want-my-doctors-to-help-me-live-not-die-1499381064

[Carol in Cal.]

 

And aren't those "regulations" what the current admin is trying to get rid of?  So that prices will go down? Once that is depleted then what do we have?

 

 

I don't support selling medical insurance across state lines specifically because having a plethora of state insurance commissions slows down the rate of change in insurance plans.  Current administration be darned.

[catz]

On the issue of asking an older person if the want a DNR.  I don't feel like health care providers necessarily provide good solid information about the odds of successful resuscitation.  There is data and studies that show odds are definitely not in your favor if you  are over a certain age.  I often feel like they dance around this issue.  Our society has real problems talking about death.

 

http://www.reuters.com/article/us-cpr-survival-elderly-idUSKBN0DP1IH20140509

 

If you are not in a health care facility when you need to be resuscitated, your odds are much worse at any age.

 

https://newoldage.blogs.nytimes.com/2012/08/09/how-successful-is-cpr-in-older-patients/?mcubz=2

 

My father was resuscitated at age 71 and on life support for 5 days.  He was fairly stable those 5 days on life support but he was brain dead.   If he weren't brain dead, he could have gone on just fine.  There was one nurse that gave us the facts when we were going through this and I really appreciated it. 

 

That said, I do think they should be tracking exactly what information patients get, should give them the data, allow them to mill it over, mark the records with a yes or no and move on.  They should only be asked again if the health of the patient changes.  Talking about JUST broken ribs is doing a patient an extreme disservice.  Many of the small number of patients who do survive have lasting brain damage and need nursing care. 

 

ETA - another good link with more info.

http://www.the-hospitalist.org/hospitalist/article/124220/what-are-chances-hospitalized-patient-will-survive-hospital-arrest

Edited July 7, 2017 by WoolySocks

[Spy Car]

This is so true. 

 

Just on WTM we have stories like Bill's where someone was pressured to sign a DNR when not appropriate, and other stories where families WISH the doctor had offered that or discussed it that but didn't.  Someone in Bill's dad's position might have made the exact opposite choice, same situation, based on a million other life factors.  The more I read the more I understand how doctors are often in a no-win situation.  What they are praised for by one family they will be criticized for by another family.  

 

Healthcare plans in general will be the same.  

 

Right. And some people are ready to go.

 

The whole issue of physician-assisted suicide or aid in dying or death with dignity brings up many of the same ethical conundrums.

 

Having people suffering and in pain who are ready to go isn't compassionate.

 

Having physicians crossing the line of life preservation to advancing life termination is troubling.

 

And having a system where some people (and some families) feel pressured due to the financial realities of late life stage costs potentially bankrupting estates, and looking to euthanasia as an economy measure, is disquieting.

 

It all gets very complicated ethically.

 

Bill